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Schubert Center for Child Studies

Policy Brief 6 | October 2007 A Series of Research and Policy Publications of The Schubert Center for Child Studies College of Arts and Sciences Case Western Reserve University

The Long Term Outcomes for Premature and Low

Advances in medical technology have greatly increased the BIRTH WEIGHT % OF ALL BIRTHS3 likelihood of survival for premature and Low birth weight: < 5.5 lbs (2500g) 8.2% (LBW) infants. Before the introduction of neonatal intensive care in the 1960s, LBW babies experienced higher rates of Very low birth weight: < 3.3 lbs (1500g) 1.5% developmental delay with decreasing birth weight.1 Interventions to “improve” outcomes often did more harm than good, appears that even survivors who pass through infancy without including blindness caused by the liberal use of oxygen, deaf- severe neurodevelopmental or functional consequences may ness caused by antibiotics and brain damage related to the experience a number of long term adverse outcomes, includ- use of sulfa drugs. The introduction of neonatal intensive care ing limited academic skills, poor vision, poor motor skills and in the 1960s greatly improved outcomes, especially for very other chronic challenges, such as asthma and cerebral low birth weight infants (weighing less than 3.3 lbs), and by palsy.2 The child’s risk for negative outcomes increases with the 1970s, 80% of survivors were reportedly free of serious decreasing birth weight or gestation, and often negative out- disability. The introduction of therapies in the 1990s, includ- comes do not become apparent until the child enters the ing surfactant therapy and increased use of antenatal steroids, school setting.1 Furthermore, children of women of low further increased the survival of the smallest babies.2 Survival are at greater risk for premature birth. rates have stabilized since the mid 1990s, and approximately There is evidence, though, that enrichment programs for LBW 70% of the 22,845 children born weighing less than 2.2 lbs children may moderate the negative effects of premature in the United States in 2002 survived.2 While advances in birth, and these programs appear to be particularly effective medical technology have saved the lives of many children, for low birth weight children of lower socioeconomic status.1 increased rates of survival have also raised questions about Understanding the potential adverse outcomes of low birth the long term impact of low birth weight on health and quali- weight requires rigorous longitudinal research following the ty of life, both for the infants and their families. developmental trajectories of large numbers of LBW children through childhood, adolescence, and even into adulthood, to Survivors of premature birth may experience a range of cog- assess the long term impacts of low birth weight. Research nitive, psychological and physical consequences of low birth which has been underway since the late 1970s at Case weight. Though the majority of LBW children do not experience Western Reserve University has provided a wealth of informa- long term consequences, this population has higher rates of tion on the complex biological, developmental and social health and developmental challenges than normal birth weight consequences of low birth weight over the lifespan. children.1 Beyond the biological risks of low birth weight, it

THE SCHUBERT CENTER FOR CHILD STUDIES in the College of Arts and Sciences at Case Western Reserve University promotes multidisciplinary research on children and childhood. Our goal is to build and enhance connections among research, policy, and educational initiatives at the University and with the community. The Schubert Center’s focus is on children and childhood from infancy through adolescence in local, national, and international contexts.

Jill E. Korbin, Ph.D. DIRECTOR | Molly Irwin, M.P.H. DIRECTOR, CHILD POLICY INITIATIVE | Eileen Anderson-Fye, Ed.D. ASSOCIATE DIRECTOR | Elizabeth Short, Ph.D. ASSOCIATE DIRECTOR Jessica McRitchie ADMINISTRATOR | Gayle Channing Tenenbaum, M.S.W. CONSULTANT | Donald Freedheim, Ph.D. FOUNDING DIRECTOR | Michelle McTygue DESIGN Focus on Research at Case Western Reserve University

Dr. Hack is the Director of the High Risk Follow-Up Program, which has been following multiple cohorts of low birth weight babies through to adulthood since 1973. The High Risk Follow-Up Program has resulted in the publication of over 100 articles providing detailed information on the short and long-term consequences of low birth weight and has produced valuable informa- tion on the biological, psychological and social effects of LBW on individuals and their families.

Maureen Hack, M.D. RESEARCH SUMMARY Professor Understanding the potential long-term costs of caring Taking Care of Low Birth Weight Children Department of for increasing numbers of LBW children requires thor- Caring for a child with significant health and develop- and Department of ough knowledge of potential outcomes and their mental challenges may present a significant burden Obstetrics and Gynecology impact across the life course. Though the majority of for families of low birth weight infants. Chronic neu- Case Western LBW children develop normally without significant rodevelopmental conditions require greater invest- Reserve University consequences, LBW children are at greater risk than ment of parental time and energy to manage the normal birth weight children for a number of neu- daily functioning of a dependent child. The results of rosensory, cognitive, neuropsychological, behavioral, Dr. Hack’s research suggest that 48% of children academic, health and growth problems. These chal- born weighing less than 2.2 lbs have one or more lenges remain despite improvements in neonatal compensatory dependence need, including taking intensive care procedures. daily medications, requiring special equipment for walking or personal assistance for eating, dressing, Dr. Hack’s research has illustrated the relationship washing and toileting. Families with lower socioeco- between the potential physical consequences of low nomic status, less parental education and a history of birth weight and the impact of these health chal- maternal depression experienced particularly high lenges on children’s lives (See table below). Y

T LOW BIRTH WEIGHT THROUGH THE LIFESPAN: KEY FINDINGS OF THE HIGH RISK FOLLOW-UP PROGRAM I S R E NEUROLOGICAL • , blindness, deafness and other neuromotor dysfunction are potential risks of low birth weight. V I ABNORMALITIES • Though the mean IQ score of low birth weight children falls within the average range, there are higher rates N

U of deficient and subnormal intelligence.

E V

R GROWTH AND • Growth attainment is generally lower than normal birth weight peers. E

S DEVELOPMENT • Compared to their peers, children born with low birth weight are more likely to experience functional limitations. E R

N HEALTH • Higher rates of health problems result in more medical and surgical procedures, frequent rehospitalizations R

E PROBLEMS after surgery, and limitations to the activities of daily life. T

S • The rates of conduct disorder, hyperactivity and attentional weakness increase with decreasing birth weight E and are associated with brain injury due to low birth weight. W

E

S SOCIAL EFFECTS • Mental or emotional delay can limit a child’s ability to participate in physical activities and to or socialize A

C with others.

T • Health problems contribute to an increased number of days spent in bed, restricting children’s activity, A

decreasing their school attendance, and limiting their social interactions. H

C • Learning problems at school place LBW children at greater risk for grade repetition or placement in special

R education programs. A

E • LBW teens are involved in fewer risky behaviors in adolescence, including lower rates of alcohol and mari- S

E juana use, less contact with police, and lower rates of than normal birth weight teens. R

N FAMILY ISSUES • Low birth weight has significant negative effects on families, including financial impact, increased caretaker O

S burden, and general family burden.

U • of low birth weight children exhibit higher levels of parental protection at school age than normal C

O birth weight children. F schubert center for child studies | policy brief 6

1982-1989 1990-1999 2000-2002 100 NO IMPAIRMENT

158 306 117 IMPAIRED* 80 LOST TO

L FOLLOW-UP A T DIED O

T 60 rates of impact. This illustrates the need for 60 F 24 O

support for families with LBW infants with T 161 N

E 40 36 health or developmental challenges. C 41 R

E 12 P 20 The increasing caretaking demands on fam- 254 241 68 ilies of LBW infants also appear to affect the 0 -child relationship. Children with a n=496 n=749 n=233 Figure 1 Comparison of death and survival with and without neuro-developmental variety of chronic problems are supervised impairment at 20 months’ CA for 500-to 999 g birth weight infants born during 3 periods: and attended by their parents more closely 1982-1989; 1990-1999, and 2000-2002.5 than children without such conditions. Increased parental protection of low birth low birth weight illustrates the need for likely the result of improved neonatal pro- weight children suggests effects on a child’s long-term programming to mitigate the cedures to support infants born at increas- development of autonomy and interperson- potential negative effects of low birth ingly low birth weight. Though this trend al relationships as these children enter ado- weight on individuals’ future health and educa- suggests that advances in medical technol- lescence. Increased parental protection may tional attainment. ogy are saving lives and reducing impair- have positive effects in adolescence. Dr. ment, it is not necessarily sustainable. If Hack’s research has shown that LBW The Effects of Medical Technology on increasing numbers of infants continue to infants are involved in fewer risky behaviors Low Birth Weight Outcomes be born at decreasing birth weight, in adolescence. As technology and medical practice have advances in medical technology must keep changed, Dr. Hack and her colleagues have pace with the significant health challenges The Long-Term Effects of Low Birth Weight followed new cohorts of infants to examine of LBW infants. Following a cohort of 242 children born changes in outcomes based on the tech- The High Risk Follow-Up Program, under weighing less than 1500g in the late nology available at the time of birth. They the leadership of Dr. Maureen Hack, has 1970s, Dr. Hack found that even in adult- have compared neonatal therapies and out- provided extensive information on the hood, these individuals continued to have comes among infants born weighing less physical, psychological and social effects of higher rates of chronic conditions attributa- than 1000g who were born in three peri- low birth weight. This increased under- ble to neurosensory impairments and sub- ods, ranging from 1982-2002 (see figure standing of the potential consequences of normal height. Such children also had less 1). It is encouraging that in the comparison LBW provides opportunities for service educational attainment as young adults; of the most recent two cohorts of infants, providers and policy makers to develop their average age at high school graduation survival without impairment increased while programming to address both the short was higher, and they were enrolled in post- survival with impairment decreased, includ- and long-term needs of LBW children and secondary studies at a much lower rate ing decreased rates of sepsis, intraventricu- their families. than normal birth weight children. The evi- lar hemorrhage, cerebral palsy, and neu- dence of the long-term consequences of rodevelopmental impairment. This trend is

The information about Dr. Hack’s research was drawn from the following sources:

• Hack M, Klein N, Taylor H. Long-Term Developmental Outcomes of Low Birth Weight Infants. The Future of Children. 1995;5(1):176-196. • Hack M, Taylor HG, Drotar D, Schluchter M, Cartar L, Andreias L, Wilson-Costello D & Klein N. Chronic Conditions, Functional Limitations, and Special Health Care Needs of School-aged Children Born with Extremely Low-Birth-Weight in the 1990s. Journal of the American Medical Association. 2005;294(3):318-325. • Wightman A, Schluchter M, Drotar D, Andreias, L, Taylor HG, Klein N, Wilson-Costello D & Hack, M. Parental Protection of Extremely Low Birth Weight Children at Age 8 Years. Journal of Behavioral Pediatrics. 2007;28(4):317-326. • Hack M, Flannery DJ, Schluchter M, Cartar L, Borawski E, Klein NK. Outcomes in Young Adulthood for Very-Low-Birth-Weight Infants. The New England Journal of Medicine. 2002;346(3):149-157. • Wilson-Costello D, Friedman H, Minich N, Siner B, Taylor G, Schluchter M & Hack M. Improved Neurodevelopmental Outcomes for Extremely Low Birth Weight Infants 2000-2002. Pediatrics. 2007;119(1):37-45. schubert center for child studies | policy brief 6

IMPLICATIONS FOR POLICY AND PRACTICE

The findings of the High Risk Follow-Up Program are relevant for as the use of alcohol, cigarettes, and illicit drugs, which contribute policy makers, clinicians, service providers and parents. They clear- to poor fetal growth and other complications. ly illustrate the advances in care for low birth weight infants over Programs and policies should be put in place to assure that all the last 30 years and show that more and more low birth weight have access to regular . This requires not babies are surviving. However, more work remains to be done. only expanded access to prenatal care services themselves, but Low birth weight in the United States is a troublesome and per- also ensuring that pregnant women, and all women of child bear- sistent medical and social problem. Despite the improvement in ing age, have adequate health coverage. Women who lack health outcomes for LBW infants, the rate of low birth weight remains insurance are less likely to seek and obtain prenatal care. Efforts high and has been rising steadily since the mid-1980s and now to expand eligibility for Medicaid and SCHIP (the State Children’s equals the rate reported nearly 40 years ago. The most recent data Health Insurance Program) and to ensure that all eligible individu- from the CDC/NCHS National Vital Statistics System3 show that als are enrolled are crucial. the rate of low birth weight was 8.2% of all births in 2005. This In those cases that low birth weight is not prevented, as Dr. Hack’s is 8% higher than in 2000 and 22% percent higher than in 1984. research demonstrates, immediate care and treatment followed Also of concern are persistent racial disparities. Nationally, black by early intervention services can greatly improve the outcomes infants are more likely than babies of other races to be low birth for these children. In Ohio, programs such as Help Me Grow weight. In 2005, 14% of non-Hispanic black infants were low work to identify LBW children at birth and provide them and their birth weight, compared with 7.3% of white infants. Additionally, families with needed services (for more information see: black infants weighting 1500 grams or less are five times less http://www.ohiohelpmegrow.org/). likely to survive than white infants. The research presented in this brief demonstrates that much progress Researchers and medical personnel continue to struggle with the has been made. However, continued efforts to reduce the number persistent problem of low birth weight. To address it, it is very of babies born with low birth weight and to improve outcomes for important that research into the causes of low birth weight con- them will benefit not only the children themselves, but also their tinues, and that data on birth outcomes be continuously moni- schools, communities and families. Dr. Hack’s research contributes tored. These efforts identify the predictors of mortality and greatly to our understanding of the issue of low birth weight morbidity. For example, we know that some groups of mothers, across the life course, and provides considerable insight into ways such as adolescents, women over 35, and mothers with a history policy and practice are, or could be, used to address this issue. of LBW births are more likely to give birth to a LBW infant. This type of research will provide clues as to where and to whom pre- 1 Hack M, Klein N, Taylor H. Long-term developmental outcomes of low birth vention efforts should be directed. weight infants. The Future of Children. 1995;5(1):176-196. 2 Hack M, Taylor HG, Drotar D, Schluchter M, Cartar L, Andreias L, Wilson-Costello Primary prevention of preterm and low birth weight birth is the first D & Klein N. Chronic conditions, functional limitations, and special health care goal. We know that women who have access to adequate health needs of school-aged children born with extremely low-birth-weight in the services before, during, and after have better outcomes 1990s. Journal of the American Medical Association. 2005;294(3):318-325. and healthier children. Thus early and regular prenatal care is critical. 3 Martin JA, Hamilton BE, Sutton PD, Ventura SJ, Menacker F, Kirmeyer S, Munson ML. Births: Final data for 2005. National vital statistics reports; vol 56 no 6. At prenatal visits, the health of both and is monitored. Hyattsville, MD: National Center for Health Statistics. 2007. Specific attention can be given to maternal nutrition and weight 4 The Mother Child Health Federal State Partnership. Ohio Snapshot 2006. gain which affect fetal weight gain and birth weight. Prenatal care 5 Ohio Department of Health. Needs assessment of Ohio's maternal and child also provides an opportunity to address maternal behaviors, such health population. Columbus, Ohio 2006.

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